# Patient-reported symptoms captured as standard structured data in every clinic

Source: https://onco.cc/ideas/idea-data-pro-as-structured-standard/  
OnCo record `idea-data-pro-as-structured-standard` (Idea). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

Every cancer clinic would collect patients' own reports of symptoms and quality of life through a standard questionnaire that feeds straight into the record and into research datasets.

## Summary

Electronic patient-reported outcomes (ePRO) improved survival in a randomised trial (Basch et al., 2017) yet remain absent from most routine records and from almost all real-world datasets. The proposal standardises a minimal PRO set (PRO-CTCAE core items, EQ-5D-5L) as an mCODE profile, requires it in oncology EHR certification, and funds the clinic workflow. Toxicity and quality of life would then be available as a real-world endpoint at scale.

## Fields

- Kind: Idea
- Last checked: 2026-09-08
- Hypothesis: Standardised ePRO capture in more than 50 percent of oncology visits will make real-world toxicity comparisons between drugs possible and reveal quality-of-life differences invisible in registries.
- Rationale: Symptom monitoring has trial-proven benefit for patients; the data infrastructure payoff is additional. Standardisation is what makes the data pool.
- Proposed test: Implement the standard PRO set at ten centres and compare response rates and data completeness with centres using bespoke tools; produce a first cross-centre real-world toxicity comparison for two competing regimens.
- Maturity: being-tested-at-scale
- Actor: clinic

## Sources

- Basch et al., JAMA 2017 (ePRO and survival): https://jamanetwork.com/journals/jama/fullarticle/2630810

## Connected records

- fronts: [AI & Computation](https://onco.cc/fronts/ai-computation/), [Supportive Care & Survivorship](https://onco.cc/fronts/supportive-care/)
- terms: [Real-world evidence](https://onco.cc/terms/real-world-evidence/)
- bottlenecks: [Data silos](https://onco.cc/bottlenecks/b-data-silos/), [Toxicity and quality of life are undervalued](https://onco.cc/bottlenecks/b-toxicity-qol/)
- ideas: [Toxicity-management decision support for nurses and pharmacists](https://onco.cc/ideas/idea-data-toxicity-cds-for-nurses/)
- key papers: [Basch: asking patients to report symptoms online during chemotherapy improved survival](https://onco.cc/key-papers/paper-basch-epro-survival-jama-2017/)

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